Chiari Online Support Group


Hello Everyone. I go by "MultiGurl" here. I'll try to make this quick:

In 2011 I was diagnosed with a minor Chiari Type I that the doc didn't feel was importation enough to mention (despite having neuro symptoms). In 2013 I had a second MRI. No change in the Chiari (at least I knew I had one now). Tonsils at about 5mm herniaiton. July 2015 another MRI due to generalized worsening neuro symptoms and difficulty with speech, swallowing and a "catching" breathing. July MRI showed tonsils at 7mm. I saw a neurosurgeon after the July MRI. She ordered a CINE MRI in Sept 2015. The CINE MRI was sent through the Patient Portal. The tonsilar herniation lies at 3mm and not meeting criteria for a Chiari Type I.

I've had various neuro symptoms since I was 16. I'm 44 now. This neurosurgeon said she didn't doubt I had a symptomatic Chiari prior to my scan, but she was very worried about the EDS co-morbidity. Now I can't get anyone to return my calls or emails. How is this possible?? Do tonsilar herniations change that quickly? I don't feel the neurosurgeon believes my symptoms any more.

I have never heard of the tonsils there a way you could get a second opinion?

MultiGurl, I'm sorry you've been left with so many question marks and struggling to get a reply from your doctors office. I wonder if this is simply just the consequences of the Thanksgiving holiday (hey, I'm an optimist!) rather than a shouty accusation of surgery seeking.

Reading your post and looking at the 5mm - 7mm - 3mm measurements got me thinking about something I'd read a while back on another members post about how miniscule these measurements actually are to discern/differentiate on an MRI. Here is the link to that discussion.

You really would benefit, I feel, from being able to talk this through with your NS because many symptoms that could be attributed to Chiari may not be and certainly EDS is a significant complication and you need to understand why your NS feels the way she does. Obviously a second opinion may also help you. Surgery is not always the answer anyway.

Do check out the Ben's Friends Doctor Directory (via the Chiari Info for Members tab on the menu) if you want to find another doctor for a second opinion.

I hope whichever way you get a response and a treatment plan that your find reassurance in.

If she said, she doesn't doubt you have a symptomatic Chiari, she believes you!

Please keep us posted on how this goes!